About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, January 31, 2010

Greetings Family and Friends!

As always, I like to keep everyone posted on my progress as we fight this avm! I was really looking forward to this trip, I just wanted to see "my people" that understand me completely! So here we go! It never fails, we got on the plane on an hour or two of sleep - we always seem to pack very late and last minute and have a very early flight! We had an empty seat between us from Dallas to CO - so Saba had her own seat! We arrive in CO @ 9:30 a.m. on Wed., Jan. 27 and the weather was nice! The sun was out and it was chilly enough for a light jacket! Picked up the car rental that Mark really enjoyed! It was an Infinity!

We headed toward Park Meadows Mall, as everything we needed to do was in that area! I figured we'd kill a little time @ Borders bookstore, then have lunch @ Mimi's Cafe and then go on to my appt. w/Dr. Hepworth's office in the same area! Luckily we got there early for the appt. because it turns out, our appt. was @ his other office, closer to Swedish Medical Center! At this point, Dr. Hepworth feels he can go in and debulk the mass under my chin without it interfering with what Dr. Yakes feels he still needs to work on some of the avm in my cheek/ear area! So at this point, the doctors are discussing what they will do w/me next! Here are photos of me @ Dr. Hepworths office - he is putting ointment on my scabby area near my ear and inside it as well! The other photo show Dr. Hepworths P.A., Kris Pacheco! She is super nice and we like discussing what books we've just read!

After this appt. we went to Safeway to try and find items we can't get anymore in Corpus - like my favorite spray starch that comes in a spray pump bottle! I also found some face wipes I like to wash my face with that are NOT premoistened, so got some of that! Headed to Whole Foods to pick up something for dinner before going to the hotel and calling it an early night! This was going to be our first stay @ this hotel, as the Four Points Sheraton we always stayed @ was being converted to an assisted living place. This new place was a suite, so it was nice having a refrigerator, microwave, an oven, coffee pot and dishes, glasses, utensils! There are time we aren't too hungry, so this will be convenient to have something like soup if that's all we want! Wouldn't you know that for whatever reason, there was none of my favorite corn chowder soup @ Whole Foods! The bed was very comfortable and we had plenty of pillows, so we got a good nights rest!

I had to be @ Swedish by 7:30 a.m. to pre-register for my procedure, so here I am, next to the car before we leave! Maybe an inch and 1/2 of snow fell the night before! I had dressed Saba in a pink onesie and a denim skirt - but before taking off on this trip, my friend Felice asked me to make sure I made it to the post office before leaving for CO! She had sent me a couple of things for Saba to wear! She knows what an Olympic fanatic I am, so she sent an olympic sweatshirt w/a hood that has little slits for her ears! She also sent a t-shirt that says USA and it has sequins on it! How cool is that?! Thank you Felice! Everyone commented on Saba's sweatshirt!

So, got pre-registered and headed to ambulatory care to get ready for surgery! One of our favorite nurses is no longer in this area, but went on to Maternity Ward, so no more Sue! Our other familiar nurse was there - we call her Boston, as she has a heavy accent, but her name is Mary! Here she is, along w/Dr. Yakes P.A. Kelly! Got a nice surprise visit from another favorite nurse, Rick! He works in recovery, although he wasn't working on this day, but it was great that he stopped by to say hello! One of the anesthesiologist stopped by, Wendy - she said she was thinking of me the night before and worried about intubating me, since she knew I couldn't open my mouth too wide. She was happy to see I had a trache now, so it would be easier and safer for me to be put under! It was finally show time, so I get wheeled to surgery! Got a few minutes to talk to Dr. Yakes. Told him to go easy on me and that I didn't know how much more I could take! He assured me that we were going to beat this avm and we were going to win!

Woke up in recovery and my back was really hurting from laying flat due to Dr. Yakes doing an arteriogram! I normally sleep w/pillows under my knees for support! So I grabbed on to the side rail of the bed and pulled myself on my side and that helped the back pain! Got some morphine and ice chips and I didn't feel as bad as I have in the past! The nurse told me she was having a hard time reaching Mark - that she was getting a recording that it wasn't a working number! She finally tried dialing slower and got through! By this time, it was time for me to get to a room and Mark met me up there! Shortly afterward, Eric, Dr. Yakes other P.A. stopped by to see how I was doing! He always comes by and gives me my prescriptions and dismissal papers, that way, we can leave first thing in the morning!

Had very good help as always - here is a new tech we met named Zufan and she is from Africa! Sweet and helpful! Since Dr. Yakes only used 8 cc's of alcohol, I wasn't too bad off, and he did not work inside my mouth, so as soon as I could sit up, I was drinking juice and having pudding! Just had some blood in my hair - but I was able to take a shower that evening and get it all out and felt better! Mark stayed with me a bit and we watched the Star Trek movie courtesy of Swedish! After Mark left, I dozed off a bit, but woke up @ 3:30 a.m. and I watched The Proposal and then some movie about a dog hotel! Of course I was missing my Hanzie, but we got updates from my brother-in-law Jim about how Hanz was having fun and falling exhausted at bedtime!

Next morning after Mark showed up, we got all our stuff and went to say hello to Sadie, Dr. Yakes Patient Coordinator! She does so much that is neccessary to get my appt. scheduled, so we like to stop by and touch base with her! Also, with Mona, Dr. Yakes office manager! These ladies have to deal with insurance and all sorts of paperwork to get me up there!

Soon as we left the hospital, we headed to Wal-Greens to fill a couple of prescriptions, then to Whole Foods again to get something to eat that we could take on the plane with us! Repacked all our stuff @ the hotel, checked out and headed to the airport! Here is a photo of me probably talking to Mom and telling her we were getting ready for take off!

As always, thank you so much for all your love, prayer and support! Still no telling how many more procedures I have left, but it's got to be done slowly. In May I will be going to see Dr. Yakes for 6 years! Yikes! Our plane was late getting home, as it had to be de-iced in Dallas! It was great to get to the house, but it didn't feel like home until we picked up Hanz the next day from Jim and Shelleys house! It's great to have out little family home together again! Take Care!

Thursday, January 21, 2010

Hi Everyone!

How's everybody been? Busy, huh? So much to do and not enough hours in the day, right? Just wanted to write a little bit and tell you about changing my trache out last weekend! I have to change out the entire trache thing once a month! The "collar" that goes around the back of my neck, gets changed out once a week by Mark and I can do the gauze sponge that goes in the front by myself and I do that twice a day! Since I sleep w/a mist cup over the trache area that is attached to a hose going to a humidifier, the gauze sponge up front tends to be wet in the morning. I am so lucky my neighbor and friend Terry Serna lives 2 houses over - she is a respiratory technician and she comes over to change out my trache for me! Glad she did and that we didn't let Mark do it on his own, because we had a little bit of trouble! The skin is closing in around the trache area and when I had ordered a replacement trache from the supply company, we got the wrong size! It was too big and Terry was having a hard time getting it in there! Yikes! Fortunately, we had my original one sanitized and put away in a brand new tupperware container, so we used that! We'll have to see what size they use when I go to CO next week for my procedure! Hopeing all will go well - the insurance is saying I've reached the million dollar mark - so we have to assure them again that there is NO ONE ELSE able to help except Dr. Yakes, so they need to pay him!

I was off work on Monday and ended up having a bad bleed from inside my mouth! Luckily Mark came home for lunch and came in about 5 minutes after the bleed started! It lasted almost an hour! Hopefully Dr. Yakes can put an end to anything like that happening again! You know, when things like that happen - it is so discouraging! My Mom is always telling me how brave I am, as are other people - but I'm really not. I'm angry about all of this @ times - tired of dealing with everything! Seems I'm always having to find a way to cope w/some problem I'm having because of the avm! Now I'm sleeping w/my bed wetting alarm again in case I bleed during the night from my mouth! Gotta make sure it doesn't get in the way of the mist cup though! Plus of course I have drainage coming out my ear and scabbing inside and around it - ugh! I have to work w/the therabite again because I can't open my mouth very wide, but I had gotten away from it from trying to deal w/all the trache stuff! Agh! We look forward to these trips to CO because we know we are in good hands up there! Poor Mark can finally rest knowing Dr. Yakes and the P.A.'s are taking good care of me!

I just have to say that I am so very blessed to have such an awesome husband that takes care of our household while I can't hold up my end of the deal! After a long day @ work, neither of us feels like doing much, but Mark fixes dinner and most times cleans the kitchen too! Plus, Mark makes sure Hanz has everything he needs, from replacing his pads, to getting any meds, haircut, his nails filed! I just make sure Hanz gets lots of love and is fed!

I would also like to add that after having that bleed, some family members stepped up right away offering to donate blood for me! From my brother-in-law Jim Schuman, to my nephew Davis Fossum! I have an incredible support team backing me up!

How is Hanz the Magnificent you ask? Well, Mark had taken Hanz in to the City Vet. and one of the ladies that worked there was telling Mark that she thought Hanz was so special and cute, she just wanted to take him home with her! Oh, Mark told her she'd have a fight on her hands on that one with his wife! My baby! I miss him all day while I'm @ work! We've been having decent weather the past few days, so we have been taking Hanz for a walk! You should see him just strutting - so happy his mommy and daddy are taking him walking! Yesterday, we walked past a lady sitting on her porch and she just had to get up and come pet Hanz! He gets so many compliments on how adorable he is!

Anyway, here are some photos - the one of Mark and I is from New Years Eve and Marks 50th Birthday! My Uncle Luis and Aunt Betty were in town from Nebraska celebrating their 50th wedding anniversary - married the same day and year that Mark was born!